Newborn Screening Tests

In the US, newborns are tested for congenital disorders of metabolism and a growing list of other conditions by heelstick screening tests. What gets tested by these newborn screening panels is decided by individual states. As a result, there is a substantial variability among state panels. As of April, every state screens for PKU (phenylketonuria), galactosemia and congenital hypothyroidism. Twelve states currently mandate screening for over 40 disorders. These states are able to screen for this high number of disorders with the use of tandem mass spectrometry, which is a technology that analyzes the metabolite composition of the blood spots.

These are all rare disorders: the most common is congenital hypothyroidism (prevalence is about 1 in 3,500), with the rarest being homocystinuria and MSUD (prevalence for is about 1 in 200,000 for each). But intervening early can improve outcomes in many cases, so there is an push to test for more and more conditions.

In terms of drawbacks, the test itself is a simple heelstick. There is additional cost involved in expanded screening, however. Most importantly, as with any screening test, these screens are designed to err on the side of overdiagnosis, so confirmatory tests may be necessary, and "false positives" can certainly cause a lot of stress.

If interested, you can obtain kits for expanded newborn screening for rare inherited disorders through one of these companies:

• Pediatrix Screening (866-463-6436)
• Baylor University Medical Center (800-422-9567)
• Mayo Medical Clinic (800-533-1710)
• University of Colorado (303-315-7301)

These services screen for anywhere from 20-50 disorders and the cost ranges from $35 – $89 (plus shipping and handling). Many require the involvement of a physician in the ordering and interpretation. Not all are set up for older/international screening situations. Pediatrix seems to be the only one of these to offer a comprehensive panel that also includes the standard state screens. Unfortunately, since these are newborn screening kits, they are not designed for older infants and toddlers. You'll want to check with the company to see what their age limits are for various tests ...

In the international adoption scenario, provided the child's current legal guardian is OK with testing (a big and usually insurmountable if in most instances, but preadoptive parents in Guatemala have been successful with this), you'll need to be sure that the kit you use also covers the basic newborn screen, and not just tests that are designed to supplement the common state screens. In Korea, they do routinely test for PKU and hypothyroidism. Russia also reportedly tests for these in many regions, but the results are not typically available.

In our clinic we do not routinely send newborn screening tests on international adoptees. The Washington State lab is not set up to run the most important screens on older infants and toddlers. With our initial bloodwork, we do screen for various types of anemia, which should uncover clinically significant hemoglobin disorders, and we also screen for hypothyroidism. If children have symptoms of metabolic illnesses, there are blood and urine tests that we can perform as well.

Other Newborn Screening Resources:

• KidsHealth - Newborn Screening
  
• National Newborn Screening and Genetics Resource Center
• March of Dimes - Newborn Screening
  

Thanks to Beth Tarini, MD for background material

Culture for Kids

There apparently was a day and time when a Korean adoptee in a small homogenous American hamlet could grow up with most everyone pretending they were just as all-American, assimilated, and, well, white as the rest of their adoptive family and town.

Well, it's getting harder and harder to do that these days. The good revolutionaries of Adoption Nation have taken care of that ... But now that the importance of celebrating a child's culture of origin is widely acknowledged, where oh where does one turn to find appropriate bilingual and multicultural items, especially if you don't live in a big multiculti cornucopia like Seattle?

One great adoption-friendly catalog is available from Culture for Kids, who also produce Asia for Kids. The print catalogs are easier to browse than the website, in part because they carry so many bilingual and multicultural books, videos, dolls, and toys - picture dictionaries, translated children's classics from Guess How Much I Love You to Harry Potter (in 8 different languages!), immigrant stories, factbooks, the Language Little bilingual talking dolls, and more ...

Region-specific adoptive family organizations like Families for Russian and Ukrainian Adoption (FRUA) and Families with Children from China (FCC) are also good places to turn to for ideas on raising children from other cultures, meetings of local adoptive families, local language classes, and activities like culture camps.

Probiotics and Prebiotics

Getting Friendly with Your Gut Bacteria ...

Probiotics, or the use of beneficial bacteria, are an exciting concept in the prevention and treatment of various childhood conditions. Definitive evidence on efficacy and safety is somewhat lacking, but there have been several good studies looking at probiotics like lactobacillus and active-culture yogurts in the prevention and treatment of diarrhea. The weight of the current evidence supports the use of probiotics in acute-onset childhood diarrhea, and their use with antibiotics to prevent antibiotic-associated diarrhea. In addition, the use of probiotic formulas (available in Europe for awhile, and now in the US) may reduce the number of diarrheal illnesses for children in day-care settings. Some small studies suggest that probiotics may also help prevent colds, colic, thrush, yeasty diaper rashes, non-specific tummy aches, and urinary tract infections.

What's especially interesting is the idea that establishing a healthy gut bacterial ecosystem early in infancy may steer the development of the immune system away from hyper-reactive "atopic" conditions like eczema, asthma, and seasonal allergies; this could be very useful in families where there's a family history of these conditions. The research here is early and somewhat conflicting, but this is an area to watch.

The bacteria that colonize your intestines set up shop early on, and the bacteria found in hospital environments don't seem to be the healthiest to be colonized with. It may prove to be wise for pregnant women to consume active-culture yogurt, kefir, or probiotics, and to supplement babies with these healthy bacteria. It should be emphasized that the research on this topic is in its infancy, and that definitive safety and efficacy information is not available.  Furthermore, research has not defined what strains of probiotics work best (or at all!) for various conditions. But so far, we have not seen serious side effects except in significantly immuno-suppressed children.

As far as yogurts are concerned, not all are created equal. In kids from 8mo-2yo and in malnourished adoptees, full fat is the way to go. And check the label for sugar content - some of those brands are sugar bombs. For promotion and maintenance of healthy gut bacteria, serving yogurt daily is a safe, time-tested, granny-approved, and easy-to-find way to go. But for treatment purposes or early in infancy, you might consider probiotic supplements, which can deliver many more of these healthy bacteria than a container of yogurt.

Like any unregulated "nutriceutical", it can be hard to find reliable, standardized products, and even harder to get them covered by your insurance. Probiotics, in particular, do not always contain healthy, viable strains of bacteria. 

Culturelle supplements use Lactobacillus GG, one of the most studied strains, and are easy to find over-the-counter in most drugstores. Lactinex packets are available by prescription in some pharmacies. Nature's Way is another easy-to-find brand that sells a blend of probiotic strains, included lactobacillus reuteri, which was used in the recent infant colic study. The Biogaia drops used in that study are now available in many drugstores as well. Another excellent brand of probiotic supplements that's available locally in Seattle is the Pharmax HLC line. 

You'll also want to think about prebiotics - foods and supplements that help these healthy bacteria thrive. These can be found naturally in breast milk, honey (not for use <1yo), garlic, onions, leeks, wheat, bananas, asparagus, artichokes, and chicory root. Supplements of fructo-oligosaccharides (FOS) are also available, and Pharmax includes them in many of their probiotic formulations.

What's fun about this topic from the adoption medicine perspective is that the Eastern European docs love probiotics. "Dysbacteriosis" is a frequently seen diagnosis, often treated with "ferments and enzymes", and while you'll still want to rule out parasites like giardia and other malabsoptive causes of funny poops, I am convinced that children raised in hospitals and institutions have less healthy gut bacteria. In Russia, you can even get yogurt fortified with the power of Cosmonaut intestinal bacteria! Cosmonauts being the pinnacle of Russian health and fortitude, I suppose. Best not to think about how they collect said bacteria ...

Updated 2/13

Home Biofeedback

True confessions - both Dr Bledsoe and I have something at home called "Journey to Wild Divine". It's a home biofeedback system and "Myst-style" computer game that uses the same biofeedback technology (finger sensors measuring heart rate variability and skin conductance) that our local hospital's adolescent clinic uses to help with headaches, pain syndromes, self-regulation, and chronic stress.

We think it's an engaging and remarkably effective way to learn self-calming, better emotional control, and alertness, and have been recommending it to our older school-age patients with low frustration tolerance, poor self-regulation, ADHD, anxiety, and stress-related issues like headaches and chronic abdominal pain. The sensors measure signs of your nervous system's balance between sympathetic tone (energized, agitated, "fight-or-flight") and parasympathetic tone (calm, relaxed, "rest-and-digest"). Children who've experienced early stress and neglect tend to be chock-full of the former, with precious little of the latter. With practice, you and your kids can learn to calm yourselves much more quickly and effectively.

In the game, you move through an idyllic landscape, performing various tasks using your developing abilities to become calmer or more alert and energized. Levitating and gently lowering rocks, juggling balls, building stairways, and other nifty activities let you hone these skills until they become effortless. This game is begging for a Star Wars version, since it's really all about the Force, and Yoda would be quite at home with the game's collection of gurus ...

It's not cheap ($159), but that's about what one biofeedback clinic session would cost, and you can do it at home whenever you want. It's actually quite a good deal compared to other home biofeedback devices like HeartMath's emWavePC, handheld emWave (excellent portable device) and StressEraser, which I also like. You will need a fairly modern PC or MAC, since it uses a lot of processing and graphics power. You will also need a modicum of tolerance for SNAG's (Sensitive New Age Guys/Gals) and "what's my mantra?" mysticalisms.

I also recommend their followup game, "Wisdom Quest", which uses the same software but has 30 new biofeedback activities, which are easy to access through a new "Guided Activity Mode". You should also download a free update for their first game that enables a similar "Chapter Tour", so that you can revisit favorite activities without having to load saved games.

Another device that we have no experience with whatsoever but is appealing to my inner geek is S.M.A.R.T. Brain Games, a home neurofeedback device that uses actual brain wave sensors (instead of heart and sweat sensors) mounted in a bike helmet to help control Playstation (or Xbox) video games with your mental states. They use the ratio of beta to theta brain waves (a measure of focussed alertness and concentration) to control your speed and progress in off-the-shelf Playstation games, especially racing and jumping games.

The cost of this "brain training system"? $600 for the helmet, neurosensors, processor, and modified Playstation controller. Yowzah! But again, possibly cost-effective if you were planning on paying out-of-pocket for actual neurofeedback clinic sessions. For folks desiring neurofeedback treatment for a specific condition (like ADHD), you'd probably be best off starting, at least, with an experienced neurofeedback provider ... EEG Spectrum is a good place to start for general information and local providers.

The research on neurobiofeedback and ADHD is quite promising, if not yet definitive; see this "Play Attention!" article for a favorable take on this particular system, and The Role of Neurofeedback in the Treatment of ADHD for a review of the latest research. My opinion is that neurofeedback may well be a useful adjunct to other medical or behavioral treatments for ADHD. My hope is that it will be more broadly helpful for my patients with anxiety, dysregulation, PTSD, and perhaps even aspects of attachment difficulties. I'll keep you posted as I learn more ...

Diaper Rashes

Want an advanced degree in diaper rash management? This excellent article from Pediatric Nursing takes you deep into the world of diaper pastes, for when Desitin just isn't cutting it anymore:

•  "Diaper Rash Care and Management"

Me, I'm a big fan of the descriptively named Boudreaux's Butt Paste for your basic diaper rashes and irritations. It works well, smells good, and, well, it's called Boudreaux's Butt Paste.

Another good option is Triple Paste. I use this on raw diaper rashes that need a really tenacious barrier paste.